Humor!

BTW - with the new medication she's also got her sense of humor back! :)

A couple of long days

Hi folks,
Sorry, not much time for musings these days. We've had some challenging days since the weekend. Robin had been taking Dilaudid for pain the last few weeks, but it was no longer working for her. She was having increasing pain and confusion. We changed to a new pain medication (methadone) Tuesday night. It was a bit of work to make the change but Robin's doing much better now. She's comfortable, her pain is in control, and although she's still sometimes confused it is more cheerful than some of the paranoid confusion she was beginning to experience on Dilaudid.

Here's are excerpts from some "inter-family" e-mails the last few days which can give you a sense of what we've been up to:

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Tuesday, January 30th, 8:53pm - e-mail to family

We had a busy day with the hospice folks in-and-out of the house all day long.

Robin's pain level has escalated significantly over the past ten days. The first seven days on the pump she went from 1mg/hr of dilaudid to 2mg/hr. Sunday night she went to 2.5 mg/hr and then yesterday over the course of the day she got ramped up to 4.0mg/hr. This morning the nurse put her up to 5mg/hr. This was all because Robin's pain kept "breaking thru".

This afternoon the nurse explained that the increasing pain was either from progression of the disease, or because the pain medication wasn't the best one for Robin - or maybe it's a little of both. Given that, the nurse also noted that we have seen significant changes in Robin's abilities over the past couple of weeks, so the disease is certainly playing a role. The tumor on her right jaw is growing noticeably larger every couple of days.

The nurse noted (in a discussion with Robin) that with the increasing medications will eventually make her too groggy to converse with folks. She suggested that if there is anyone Robin feels she needs to talk too, then she should make arrangements to meet with them soon. I'm sure we would have had more people visit in the last few weeks, except Robin kept insisting that she didn't want visitors, she wanted time to get her strength back.

The hospice folks did make a change in her pain medication today. They replaced the Dilaudid medication with Methadone. They noted that this should provide equivalent pain relief, but at higher doses it should make her less groggy. They didn’t explain how much more time this would give Robin to be able to converse clearly. Right now she is pretty confused. She keeps thinking there are other people in the house, and sometimes she mumbles sentences that don't seem to make much sense. Over the next couple of days we'll see if the new drug helps make her thoughts more clear.

I've been on the phone a lot today. If you have any questions feel free to call my Dad's cell number too. I'm really not doing well at keeping up with either e-mail or voicemail. Mostly just catering to Robin at the moment.

Peace


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Wednesday, January 31st, 6:15pm - e-mail to family

We had a very long day today, but Robin is doing much better than yesterday.

Last night she was switched to methadone. I stayed up most of the night and gave her oral pain meds every two hours to make sure she didn't "get behind" and accidentally get into some serious pain.

For some reason her pain peaked this morning around 10am and she needed an extra stiff dose of the oral meds. Around noon the hospice folks kicked up the volume on the methadone pump.

Since the increase went into effect she's had a much more comfortable afternoon. We seem to be able to keep ahead of the pain once again! On the methadone she is a little confused still, but in a happier way. This afternoon she looked at a lump of blankets on the bed and she asked me with a smile "who's under those blankets?". I said "No one". She asked me again and I said "no one" as I pulled back the blankets to show her. Robin smiled and accepted my response. She seems pretty happy now. Though she still has had some pain, it definitely seems less severe!

I finally took a nap around 4pm (after constant urging from Mom and Dad)!

The Journey Continues...

Robin continues to keep up the fight. She was determined yesterday to make it downstairs after spending a day in bed. She has a hospital bed in the living room which makes it convenient to care for her. A foot massage courtesy of Hospice really relaxed her and she slept peacefully for an hour after that.

The medicines Robin has been receiving seem to be losing their punch and she had some uncomfortable times over these last two days. A change has been made which we hope will be more effective in addressing her pain and not cause her too much confusion.

The Hospice team has been wonderful with their attentiveness and concern for Robin and for all of us caring for her. We appreciate all that they do.

This afternoon, Robin is in her bed and resting comfortably.

A Riddle

A riddle from the Greek play "Oedipus the King":

"What creature walks on four feet in the morning, on two at noon and on three in the evening?"

I remember this riddle from grade school. At the time all I could think of were animals from Africa. Of course, since it was school we didn't have to wait long to be told the answer. Then it seemed a trick since "creature" didn't refer to a "wild" animal and the timeframe of one day didn't really refer to twenty-four hours.

So the answer -

the creature is "Man." As an infant, he crawls on all fours at the beginning or "dawn" of his life; when grown, he walks upright; when old, he walks with a cane.

It seems like Robin's journey now is much the reverse of a young child's. Weeks ago when she met her niece's son Dillon (who is about five months old), they seemed to share some common traits. They were both relatively bald, they shared some degree of limited mobility, and they were both changing. Dillon's been picking up new skills, while Robin has been giving up skills acquired over a lifetime.

The thought first struck me just after New Year's (when Robin was in the hospital) that her ability to travel and to do things was become more limited. Just over a year ago she had traveled to China - taking a fourteen hour plane ride. Yet as she lay in the hospital bed even a two hour plane trip seemed beyond her capability.

Each week now she loses some strength and some ability. At one point I looked at this as a sad thing, but in reality it seems like it's just part of the process. Instead of being scared each time she loses some capability, I try to view it as one more step along her path, simply part of the natural process. Milestones in a way, but maybe not events to be scared of, maybe in some odd way they are changes to be celebrated - signs that she's moving toward her destination. I'm sure her view and mine are different much of the time. She still talks about herself regaining strength and stamina, while I see those characteristics drifting out of her range. I see her legs getting thinner. I see more details on her bald head, like little bumps and lines. All I can imagine is that she's losing body fat from all over, so in some areas I'm seeing details which used to be smoothed over by thicker skin.

We've talked about her changes before, but she attributes them to not having enough time to improve herself (i.e. too many visitors). Once in a while reality inserts itself with a reminder, like sometimes she can't get out of bed without assistance, or she stumbles slightly as I walk with her to and from the bathroom. I certainly am not the one to define her capabilities. I think Robin defines them herself every day, though eventually her body will not be able to perform all the instructions that her mind commands.

PJ Party

It was a long weekend for Robin. She's had several visitors over the weekend, even though she keeps asking me to hold off on visitors so she can have time to get stronger. I'm finally letting her have her way, and we've got fewer folks scheduled in the future. Robin hasn't been eating much lately, and she's had some bouts with increasing pain. Last weekend her flow of continuous pain medication was just under 1mg/hr and now it's over 2mg/hr. She also uses the extra dose button more often these days.

This weekend she had a mix of friends and family visiting. Saturday her friend Donna came and performed reflexology for a few hours - and she also brought some excellent chicken soup! Bill and Gloria were visiting both Saturday and Sunday.

Sunday Robin did not make it downstairs, but she had many visitors with her upstairs. Sharon, Ed and Amanda visited Sunday afternoon (they brought pizza and paper plates and dessert!), and our friend Aide arrived and is staying with us overnight (she brought gluten free hot dogs and gluten free hot dog rolls)! Here's a photo (from left to right) with Aide, Robin, Sharon and Amanda!

Thanks to all the visitors! It gives Dad and I a change of pace when other folks visit. Plus thanks to Bill and Gloria for taking me out to lunch Saturday. I haven't been away from Robin in a while, but I didn't have any issue with leaving her in Dad's capable hands for the afternoon. :)

Robin's doing OK, but with the increasing pain medication she also experiences more confusion. Over the weekend she had a difficult time remembering who had visited and who was coming for a visit. When she gets tired, or has extra pain meds, she'll also say or do things that are a little out of sorts. In the morning she thought she spotted deer in the woods across the street. It's not impossible, but no one else could see them. Just before bed she asked if I was going to be going out to work on the roof with a bunch of people - I just told it her was too cold and I wouldn't be going out on the roof this time of year…

"Have a good day!"

Robin explains that in the morning you say:

"I'm going to have a good day. That's what you say, and then that's what you have."

She's been getting progressively groggier. She continues to get small increases in her pain medication each day. Whereas last weekend we thought 1.0 mg/hr of Dilaudid was a high amount, now she's on 1.9 mg/hr continuously. We were told that it would be considered a high dose if she reaches around 4.0 mg/hr - she does have doctor's orders to go as high as 8.0mg/hr. We've been careful to not increase the dose indiscriminately, Robin has always preferred to tolerate some pain because it often turns out to be transient. We tend to give her small increases when she's been experiencing pain on-and-off during the day and the "extra dose" feature doesn't keep it under control.

We do know that increasing pain is a sign of disease progression. Increasing temperatures (fever) are also a sign, although she hasn't broken 103 since Tuesday. A third sign is increasing fatigue, but we're not entirely sure now how much fatigue is from the pain medication and how much is from the disease. On a day-to-day basis Robin still has periods where she can talk and sometimes get up out of the bed, but her naps do seem to last longer each day.

Each day seems to take a little more effort to get up the stairs. Luckily we have the hospital bed setup downstairs so she can sleep there if she chooses.

Gone From My Sight (poem)

The other day Robin picked up one of the pamphlet's from Hospice - the one entitled "Gone from my sight". I said to her that it described the physical and spiritual phases of the dying process and that she could read it if she wanted. I also offered to read a section I found touching - an offer made selfishly so I could take the pamphlet out of her hands. She accepted the offer so I opened the book to the back page and read the following passage which is credited to an American author.

I can't remember ever having to call on my sprituality to get me through a specific experience before, but I actively asked for assistance to keep my lips moving and my voice from cracking as I read it out loud:

Gone From My Sight

I am standing upon the seashore. A ship at my side
spreads her white sails to the morning breeze and
starts for the blue ocean. She is an object of beauty
and strength. I stand and watch her until at length
she hangs like a speck of white cloud just where
the sea and sky come to mingle with each other.

Then someone at my side says: "There, she is gone!"

"Gone where?"

Gone from my sight. That is all. She is just as large in
mast and hull and spar as she was when she left my side and
she is just as able to bear her load of living freight to her
destined port.

Her diminished size is in me, not in her. And just at the
moment when someone at my side says: "There, she is gone!"
there are other eyes watching her coming, and other voices
ready to take up the glad shout: "Here she comes!"

And that is dying.

...Henry Van Dyke

Home hospital bed

Having the pain med pump has been somewhat of a miracle. The other night as she sat on the toilet and we washed her up for bedtime she said "here I am dying and I get all this sophisticated equipment".

The pump has been great because it helps keep her pain at such a low level. Prior to the pump the worst time of the day would be waking up in the morning when her medication had worn off. She would be grimacing and barely be able to move and we'd give her some pills and then have to wait fifteen to twenty minutes while the medication kicked in. Things weren't so funny in those days, but now that Robin's more comfortable even her sense of humor has rebounded.

Today we had a home hospital bed delivered. When Robin came downstairs she checked out the new bed and the supplies which were delivered with it. She turned to look at Dad and I, and she said "I've got something you don't have". Dad asked what, and she said "I've got a bed pan", and then she added with a smile "I could sell it to you for something!". (well, I guess the meds make her a little goofy too!)

Snoozin' in her spare bed:

Teary eyed sometimes

Over the past seven months I have had periods when stress built up and I'd start feeling like crying. Usually there was some thought in my head that just had to get out. Usually it would start to come out while I was alone - driving the car or shopping at the store. Eventually I'd speak to someone about it and the feeling would pass.

The last few days I've been having the feeling again, but there didn’t seem to be any one thought that has been pestering me.

I'm starting to think it's because there don't seem to be any more major tasks for me to set out to accomplish. There's no research to do, no appointments to be made. We've approached everything full-bore for so long it seems hard to let go and relax.

Even entering hospice seemed like it would bring a change to the endless list of things to do, but the first few days Robin was home I spent time creating her "patient chart" in a three ring binder with tabs for the various topics. There's a section for tracking daily meds, a section to chart activities of daily living (like taking a shower, brushing her teeth, cleaning around her stomach tube, etc.). There's a tabbed section that contains an information page for each drug she takes. There's a tab section for general notes.

I remember showing the binder to each person who came in the house. Even as I would show it to folks I would wonder to myself, why am I showing this to a visitor? It felt odd to be showing how organized we were.

Tonight when we got Robin ready for bed, I slowed down and took extra time. As she sat on the edge of the bed we hugged. It got to be so long I finally got down on my knees and let her rest her head on my shoulder. No need to hurry. Don't know how many more opportunities there will be to just sit there and just hug, so might as well make it last. These days I never leave the house (or re-enter it) without stopping by the couch to kiss her and tell her I love her.

The last thing we did was clean her stomach tube while she lay in bed. She was getting pretty sleepy and could hardly keep her eyes open so she let me do the work. As I cleaned and rinsed and dried the area around her tube I talked out loud, describing what I was doing. She didn't really need to know, but it felt nice to be talking. As we finished up I thanked her for letting me take care of her.

Every 100 years

Remember, every 100 years all new people!

Everyone who is alive today will be gone and there will be a whole new population.

(unless genetic engineering wreaks havoc on the nature of things!)

Fun Day

Robin's been having a fun day. She had the hiccups earlier and while picking out some clothes she turned to me and said in a very gentle voice "boo". I didn’t understand what she was doing so I just laughed. Then she began to tell me that she made a bet and she lost the house and got cancer. My concern meter started to peak because I'm thinking she must be really confused, so I asked her "what do you mean by that?"

She said "I'm just trying to scare myself to get rid of the hiccups" and she smiled. I smiled and laughed, and with a tear in my eye I said "stop it you're making me cry". So she gave me a soft hug and a smile and said sorry if she scared me.

Later in the day Robin and I were meeting with the nurse, we were all hanging out in Robin's bedroom. We were talking about pain meds and being careful not to overmedicate Robin. The nurse said "we don't want to give you so much medication that you start hallucinating". Robin immediately rolled her eyes and looked to a far corner of the room. This surprised the nurse, but in typical nurse fashion, she asked very calmly and as if nothing was wrong "Did you just see something Robin?", "Did you see something in the room?". Robin gave her a vacant look and I leaned toward the nurse and said "I think she's just joking about the hallucinating part". Robin broke out in a smile and we all laughed about it.

The hospice nurse says that our household is one of the most peaceful ones she has ever visited! It must be all that positive energy people are sending each day! :)

Journey of Discovery

Even in this cocoon where we can talk about dying, and in which we interact with people who work in the field of actively helping patients come to term with their deaths, the information sometimes still seems scarce. Sometimes it's because we haven't read all the materials. I'm sure sometimes it's because we don't actively ask all the questions that we could. Other times I think it's because our helpers are not here to pump us full of knowledge, but rather to hold our hands and wait to answer our questions when we're ready to ask them.

We do have an excellent booklet from Hospice entitled "Gone From My Sight, The Dying Experience" which details the variety of changes which a person may go through in the final stages of their journey - well, I guess the slow protracted journeys in which the person doesn’t simply die without warning!

What I had gathered the last few days is that rapidly escalating pain and increasingly high temperatures (which don't appear to be infection related) can both be signposts along the way. This morning Robin's temperature was 103.9, the highest yet! I reviewed the most recent observations with Robin's nurse and we discussed these two escalating symptoms. The nurse described other things for me to watch for in the future, e.g. swelling of the extremities. As we talked, I decided that we should move out onto the back porch (into frigid temperatures) where I felt like I could ask questions more freely.

When I re-entered the house Robin wanted to know the result of our conversation. My old self wanted to hesitate, it wanted to say everything was fine and we've got things under control. My new self doesn't know how to do that with Robin anymore.

I told her what I'd learned about these escalating symptoms and that the nurse described them as signs that the disease is progressing.

For the first time in six months we cried together but without our characteristic laughing and joking. This time it really shook us to the core. The rest of the day there hasn't been any talk about bicycles.

Reality drifts around just outside of view

Some of Robin's goals started to seem further away once she was put on the pump. On Sunday morning as the nurse adjusted the pump medication level, we talked about Robin's goal to ride her bicycle. The nurse explained the Robin might need to set different goals based upon the "state" that her body is in. The nurse noted that although exercising to gain strength would be helpful to a healthy persons body, it might actually be counter productive for Robin to exercise. It might simply drain her strength rather than make her stronger.

Moments of delirium

Last Friday when Robin was increasing the number of pain med tablets (before she got the pump) she finally achieved a good pain free level at 11pm. She joked with my sister Kim and I that it was nice to have occasional periods of delirium. She also joked that "on drugs you can say whatever you want and it doesn’t have to make sense". When she's pain free her positive joking spirit always seems to come out!

Living in Duality

When Robin selected the hospice route she felt freed up from a future of "doctor visits and chemotherapy treatments". To her that meant the opportunity to get her strength back and to work toward riding her bicycle again. Robin's always been so positive - but when she selected the hospice route I hadn't expected that she would once again achieve that degree of freedom.

While I began to work with family members to make sure we had lots of visitors the last few weeks, Robin kept saying she wanted time alone to recover and that she could always meet with folks later - after she had her strength back.

I struggled for a few days trying to reconcile the differences between our two attitudes. In the end I realized that as her primary support person (and husband) it was my responsibility to help her develop steps and milestones to achieve her goals - not just as an exercise but with the intention that she would be able to meet them. In the end we compromised so that she has had some wonderful visits with family, while we also have actively discussed what "baby steps" she needed to make in order to achieve her goals of regaining her strength and riding her bicycle.

The glue that has kept my mind together while holding these two perspectives was a gift from my counselor Alex. He suggested that this was not a time in our lives to let our level of communication decrease, rather we should strive for better communication than ever before. The topic came up in December because Robin was hoping for a cure from a treatment center outside the U.S. I had done some research and found nothing positive about the company, but I didn't want to tell Robin because I thought she might lose hope. Alex pointed out how it cruel it would be to let her continue to have hope in an option which did not exist, only to inform her later of the bad news. That night I went home and told Robin the bad news about the company and it actually helped move us forward by eliminating one more variable.

Anyway, the increased communicaiton has helped me numerous times in the last few weeks. I've been able to support Robin's goals, but at the same time I've been able to continue to state my thoughts and observations in a positive way.

For example, in supporting Robin's goal to ride her bike I noted that we should make small achievements to get there - walk down the block, walk around the block and eventually try a short bike ride. She still hasn't been out of the house, but I felt the important thing was that we recognized how to meet the goal and we've continued to focus on getting thru the first steps, instead of simply saying each day "yeah, next week you'll ride your bike".

While it would have been great to see Robin ride her bike again, the greater reward for us has been the ability for us to talk about the issues and work together - toward mutual but seemingly opposing goals. Our efforts would have been pretty hollow if I had just parroted her statements about riding her bike again without really meaning what I said.

Increasing pain meds...

On Sunday afternoon Robin had her pain meds adjusted upwards by 150%. This put her to sleep pretty quickly. Even though the nurse said Robin would adjust to the new level, we asked that the level be lowered since Robin has never been a fan of too much medication. The nurse was very helpful is decreasing the dose, and then slowly increasing the pain medication, but by Monday might it became apparent that Robin was going to need that original high dose. We were grateful that the nurse worked with us to ease both Robin (and us) to the higher med levels.

We did have one scary episode Monday night when Robin pressed the button for an "extra dose". The extra dose of pain medication made her a bit confused and thought she was back in the hospital. I just kept telling her that everything was OK and after a while she was able to relax.

Sunday adventure

We should have seen the pain Saturday night as foreshadowing for Sunday morning. Robin awoke around 8am feeling serious pain (level 8 out of 10). It was is all the regular places (legs, lower back, knees) but now it was also appearing in her shoulder blades!

We put in a call to the hospice on-call number. Within a few minutes the on call nurse called to discuss Robin's status. We agreed to give her a Dilaudid tablet for semi-quick pain relief, and the nurse arrived at her bedside less than an hour later. The nurse doubled the machine's output which has turned out to be just about right for Robin. She remained relaxed and comfortable throughout the day, and was just beginning to experience pain late in the evening, but right now that seems to be controllable with the "extra dose" button.

During the day Robin had more family visitors - Aunt Flo and Uncle Mike in the morning and Sharon, Ally and Dillon in the afternoon! Robin and Dillon were still competing for the award "cutest bald person" throughout the visit.

Flo and Mike - thanks for the coffee, donuts and gift card! G+R

Living in a "Hospice House"

After Robin got the pump last night around 10pm I started to feel more relaxed, but we still had a couple of up and downs to get through. When I went to bed after midnight I found her awake and in pain. We hit the "extra dose" button once, and then 30 minutes later. The two extra doses seemed to be enough to make her mostly comfortable. For about five minutes she also had tremors in her hands and upper legs which she was not aware of until I asked about them, but the tremors settled down after she received the initial "extra" medication.

It's kind of weird being in a "hospice house". We do want her to be comfortable but there's not always an urgency to get her to the doctor immediately if there's a transient issue like the tremors (in a similar situation you might rush a person to the ER to have the person looked at). So long as the issue seems to resolve itself, we just take notes and mention it to the nurse later.

Obviously if we think there is a serious issue we wouldn't hesitate to dial the Hospice "on call" number 24 hours a day. No disrespect to the regular medical system which triages problems, but when we call hospice it feels more like we're talking to a family member on the other end of the phone. They've gone out of their way to make extra calls when needed to track down issues, and the few times we've called for assistance they were at our house in no time. I made a comment to a nurse this morning that we're grateful to have the "bedside service".

With respect to "serious" medical issues we have also been asked to not call 911, but instead to call hospice to discuss how to handle problems. It's not necessarily that Robin's getting a reduced level of care. In fact, one reason we call hospice first is because they can bypass the ER and get her admitted directly to a medical/surgical bed - we could then just take her to the hospital and put her right into an inpatient bed.

Realistically though, we might also enter a discussion (with Robin and the hospice folks) about whether to treat an issue, or whether it's time to let her body continue down it's path of shutting down. Obviously the goal of Robin's hospice care has already been defined - we're trying to make her as comfortable as possible right up to the moment of her death. A visible sign of this is a Do-Not-Resuscitate ("DNR") order posted on our refrigerator. Essentially, Robin's asked that extraordinary efforts not be used to try to extend her life. The DNR order in our home makes it clear legally to any emergency medical personnel that Robin does not want CPR performed under any circumstances.

When we first filled out the form I posted it on the fridge with magnets covering the DNR title - now there is a bit of denial…

Since then I have uncovered the words so that if it's needed in our home Robin's wishes will be clearly seen and observed.

Long Days

Robin has had a long day couple of days. She's been on antibiotics which have helped with the soreness around her PEG (stomach) tube but her temperature has been erratic. This morning she hit 103.5 again. I spoke with one of the hospice nurses who described cancer patients as sometimes having cancer induced "tumor temperatures". She noted that they can spike some pretty high temps, and they may even find that they hit certain temperatures at the same time each day.

Robin seemed to be doing OK today until about 5pm when she got sick and seemed to throw up everything she'd eaten since lunch. Though we're not certain what the root cause of the vomiting was, it did happen after she walked upstairs to retrieve some pictures. We have learned over the past week that it's best for her to take anti-nausea medicine before getting off the couch and going up the stairs each evening, so maybe it was just the walk up the stairs.

In addition, just the last couple of days Robin seems to have needed increasing levels of pain medicine. We called the hospice folks to ask about getting a pump (which we'd just declined on yesterday!). A nurse was out at the house shortly and she made the arrangements to have the equipment delivered and setup a few hours later. Now we don't have to worry about Robin sleeping longer than her pain medicine is effective. Now the medicine is delivered through her IV around the clock, plus she can press a button to press to get little extra dose if she's feeling pain. This allows her to get an extra dose about every 30 minutes.

Robin was pretty wiped out after 5pm. She stayed in bed the rest of the evening and she seems to be resting well now.

Stressed?

We're probably not stressed in the way you think.

On Wednesday I wrote about how our society doesn’t seem to often use the words related to death. Well, around our house we've had a lot of practice the last couple of weeks. When Robin was in the hospital we talked about what happens after death, and since we've been home she has even had occasion to ask visitors what they think.

Pretty much we're not focused on dying, but Robin's teaching us to focus each day on living. We don't know how much time she has left, but we don't know how much time anyone of us has left. At the end of each day I ask if she has had a good day and she invariably says yes. Sometimes we'll leave it at that, and other times we'll talk about what made it a good day! :)

Robin said that even in the toughest days of her treatment in New York, she would find one positive thing that had happened during the day and she would keep going back to that memory to keep herself going.

Hospice info

There's so much to try to convey these days and so little bandwidth. I used to do most blogging at night after Robin had gone to bed, but this week she complained that she's not able to fall asleep without me there. Besides that, I've also been a little under the weather so it's tough to keep up.

Here's some hospice info which I found pretty helpful:

General info:
http://www.hospicenet.org/index.html

Caregiver info which seemed to resonate with me, at least having gotten this far through the journey:
http://www.hospicenet.org/html/carejourn.html

Machines

Robin's been doing better on the antibiotics. Her temperature fluctuates, but now it's usually between 99 and 101. She also had a little more pain toward the end of the week. We're going to try to keep her on a schedule (taking pain meds every four hours) rather than just have her take pain medication when she needs it. The hospice nurse suggested that they could give her a pump to wear. It would be like having a purse, but it would connect to Robin's IV port and just automatically give her pain medications continuously.

I didn't like the pump idea so much, but I think it's more because she wouldn't be able to take it off herself and she would be "tied" to the machine. She's already a little unsteady walking so I was also thinking it might slow her down. I guess even more it might make her look "sick" - but hey, I guess she is sick… The nurse asked if we'd also like a wheelchair - it might help to get her out of the house, even for a ride down the block. I said sure, we'll just put it in the basement until we need it. After all, Robin had already suggested we could go to the mall and she could get a wheelchair from customer service while we were there. When I told Robin we were going to get a wheelchair she didn't seem too thrilled. I guess neither of us wants to think she needs any of these machines yet…

Robin update

Robin has been eating a little more each day. She seems a little stronger than last week though she's still on the couch all day. There appears to be an infection around her stomach tube as the skin around the tube has become red and the it's very tender. It became very apparent Tuesday night when we measured her temperature as 103! Tylenol helped bring her temp down to about 101 and today she started some antibiotics to help clear the infection up!

Robin's weekly calendar

Robin has been having trouble remembering which day it is (e.g. Monday, Tuesday, etc.). She suggested I get her underwear that has the days of the week printed on it, one pair for each day. Then with a laugh she said she'd be checking so often that people would probably think she was incontinent!

The missing words, how do we talk about death?

I recall a news story once that described past United States Presidents in terms of the 'extent of their vocabulary'. For instance, such-and-such a President had a vocabulary of 10,000 words while another President had a vocabulary of 4,500 words. I have no idea how the news media (or I guess some scholar) would estimate the extent of a person's vocabulary. I suppose they have some methodology for taking the contents of a few interviews and then extrapolating a "statistically significant" number.

Anyway, it has been odd to observe that so many of us either do not have command of the vocabulary related to death and dying, or maybe more accurately we don't exercise the words enough to have them flow easily off our tongues - who knows, maybe it becomes more natural as we age!.

One example was a voicemail from a friend who was helping us to conclude some business details. The caller described the status of the work he had accomplished and then he wrapped up the message with a common phrase such as "hope you're all doing well". In a self-conscious moment he paused and then tried to rephrase what he had said. After a few attempts he simply finished by saying something like "he would talk to us soon". I could only have empathy for the caller, having found myself in similar situations while talking to cancer patients in New York City - patients who had already faced the change from planning to "cure" their cancer to "managing" their metastatic disease.

A similar situation occurred last week when I updated someone (who is not aware of the blog) about our Journey. As we parted he said "I hope Robin gets better soon". My heart went out to this guy. I'm sure he understood where we're at, and I'm sure he probably had a moment of confusion after he uttered the words. I felt a momentary confusion myself wondering if I left out some critical item. I knew that I had described our situation in detail so I let the conversation conclude rather than make some awkward (or embarrassing) attempt to rehash the details.

Maybe in the end it's not so much that we do not have words in our arsenal but by avoiding the words we express our hopes and dreams rather than confront what reality appears to offer.

This dying thing (one tough cookie)

Robin took a shower before bed and as she was sitting down to dry off (she's a little tipsy these days) she said she felt it was important to "get this dying thing right". I said I thought "she would do it perfectly right" and her reply was that "there probably isn't a wrong way to do it".

She is typically on the couch all day long and hasn't been eating much. She is doing much better than last week as she only had the dry heaves once today, but she does take heavy duty pain medication several times during the day. Every once in a while she talks about her plans to start doing walks and getting her strength up - though just having visitors the last three days has wiped her out. In fact, she has said we should hold off on visitors until she gets stronger and has (with a smile) called me the "task master" for having so many people visit. I said I prefer to think of myself as her "cruise director". :)

As she climbed into bed she asked how long the hospice folks will support us and I said as long as we desire. Then she said "six months, a year, two years". Then she laughed and rolled her eyes saying "I guess I’m being optimistic!".

I tell her she's "one tough cookie".

More change - toilet tissue

As we have more visitors in the house I find there's more change for me to handle.

Robin and I have had a running joke for at least the last ten years. Long ago she took the position that the toilet paper roll should be mounted with the paper rolling off the bottom. It took me years to change and I finally start mounting it that way. I guess I felt it would help us to achieve a higher level of harmony in our marriage ;)

A couple of months later she started mounting it with the paper rolling off the top. I pointed out this radical change to her one day and said that she had spent so many years convincing me to have the paper roll off the bottom that I couldn't go back. So ever since, whenever she mounts a roll of toilet paper the "new way" I go ahead and change it back so it rolls off the bottom (after all there's only so much you can do to support harmony!)

This has become a major challenge with all the visitors in the house. They think they're being helpful by "fixing" the rolls and changing them so the paper rolls off the top (as if they were mounted incorrectly!).

They've got me outnumbered so I think for now I'll just go with the flow.

But I think sometime in the future when it's just up to me I'm going to mount them the old way. Not to be stubborn, but just as a little reminder to me each day…

Friday night with a few family and friends

Robin slept until 2pm Friday. She hasn't really been sick today and she's been eating!

She would prefer to get back a little more strength before she has visitors, but we're sneaking them in the back door anyway. You'll have to match the names to the faces: Robin's brothers Mike and Bill, her sister Sharon and her niece Alison who brought her son Dillon. My sister Kim is in there (she's staying nine days), and I’m taking the pictures. :)

Robin is hesitant about having lots of visitors, but will continue to have them as long as she's comfortable.

Hospice services

Everyone we've worked with so far from Hospice has been helpful, supportive and just generally wonderful. The way they run the organization is pretty amazing. Basically they offer families a full range of experienced personnel (home health aides, social workers, chaplains and nurses) and a full range of equipment (hospital beds for home, IV pumps, etc.).

The key word in the description is that they "offer" all these things. Their approach is that they are here to serve us. They're not here to tell Robin what she should do, what she will need and when she should get it - rather they are here to follow her lead. It's as if they have anointed her "General" and they are awaiting her orders. I can't imagine a better strategy to helping serve a patient and family who have felt that things were sometimes out of their control (as if life was in our control to begin with!). :)

Also, the organization continues to work directly with Robin's oncologist! It had been worrisome to imagine that we were going to have to switch to a different doctor - so it was a great relief to learn that we will have continuity with respect to the medical staff.

Arrived home Thursday

Robin arrived home Thursday! She was momentarily delayed at the hospital when our car wouldn't start. We have such great support that we didn't need our car anyway, we were able to make a call and our friend Denise showed up within minutes to pick us up and take us home - thanks Denise!

Leaving the hospital turned out to be more emotional than we expected. I think we both felt relieved that Robin would finally be sleeping in her own bed, but I think we also recognized that we were consciously leaving the environment where the clinical staff do everything to help people be "cured of their ills". Not that Robin couldn't change her mind in the future and request more treatment, but the decision to accept hospice wasn't made lightly so it seems it would be difficult mentally to switch back.

Get me some Hospice!

Wednesday was also a crazy day. We'd been waiting since Monday night for a hospice representative to come visit us. It didn't seem like it should have been taking so long because the hospice "business office" was only five doors down the hallway from Robin's hospital room.

Very early Wednesday morning (7am) I had confirmed with Robin that she did not want to spend another night in the hospital and so I switched gears to being "the aggressive patient advocate". At 8:00am I called the doctor's office (which is on the first floor of the hospital) and explained that we were ready to leave, then we mentioned it to several nurses between 8:00am and 9:00am, and then at 9:00am I went down to the doctor's office on the first floor to explain in person. In a way, it felt like I once again had an opportunity to actively support Robin's desires, though it had a strange feeling about it since we were now actively moving away from cancer treatment.

At 9:30 Wednesday morning I went down the hall to the business office and managed to find the hospice nurse who by now had Robin's chart on her desk. As sometimes happens, there was simply a lapse in communication but all the active "advocating" had helped moved the process along. The hospice representative met with us a couple of times throughout the day to discuss preparations for going home.

Late Wednesday afternoon I was meeting with the hospice nurse to review Robin's medications when I had this surreal feeling that we were now actively planning for Robin's death. I couldn't help but wonder how many people go through this experience, how a person could imagine how it feels, or even how one gets through it (although somehow you do get through it).

As it turned out the doctor eventually asked Robin to stay one more night anyway. In the meantime, we did to get one humorous offer from a nurse to help sneak Robin out Wednesday night in a wheelchair!

Hundreds of people…

Last week Robin said she was sorry for being a burden. I said that she couldn't get rid of me that easily, and that if I were to fall to the wayside there were hundreds of people behind me ready to pick up where I left off…

Stillness

Robin and I have been solo since Sunday with no family visiting. At first this seemed like it might be a "bad" thing. As often happens in life, it has carried its own blessings. For a few days this week it's just been Robin and I. Our usual routine is to keep the door to her hospital room closed. From inside the room we see so little of the outside world that we could be on a satellite in orbit.

I've spent days telling everyone who enters the room that Robin is a nurse. Last night Robin and her friend Connie explained that this is a sure fired way to keep nurses away because they will assume Robin knows what to do by herself. I suspect this is not entirely true having seen (during this visit) some nurses who have offered wonderful, attentive care and spiritual guidance which seemed "wise beyond their years". Again, as often happens in life "good" or "bad" is relative, I think the awareness that Robin is a nurse changes the experience but also enables us to receive different gifts. For instance, if the staff helped Robin get washed up each day then where would that leave me? For now I view myself as Robin's nurse when it comes to everything except giving her medication.

Each day we seem to spend more time together quietly. The television plays less but we don't feel the need to fill the stillness with talk. More often the time is filled with gentle rubbing of Robin's head, feet or arms. About half the day Robin is sleeping. She doesn't eat much. She tries to eat but food it usually comes right back up. During our trips to New York she had maintained a weight of about 120lbs, but now she's dropped to 109.

Today I took the opportunity to read her passages from the book "Tao of Pooh". We first read the book twenty years ago, but its lessons reverberate more soundly now. The book notes that the author of the oldest existing book of Taoism is Lao-tse. He views Earth as a reflection of heaven, run by the same laws. These laws influence everything from the movement of planets, to the interactions of animals in the forests and in the streams. According to Lao-tse, the further man interferes with the balance established by the natural laws, the more man retreats from harmony in this world. Lao-tse saw the world not as a place of traps, but as a teacher of valuable lessons. If its lessons were learned and its laws followed, then all would go well.

The basic Taoism described in the book "is simply a particular way of appreciating, learning from, and working with whatever happens in everyday life. From the Taoist point of view, the natural result of this harmonious way of living is happiness." "Tao doesn't force or interfere with things [or events] but lets them work in their own way, to produce results naturally. Then whatever needs to be done is done."

These sentiments seem to be reflected in Robin's view that "everything will work out fine, everything will work out as it is supposed to". Somehow I feel that "The Way" of Taoism also reverberates in the words of the serenity prayer. The serenity prayer has greater significance to me these days not because I've been carrying a copy in my wallet, but because now I find myself pulling it out and reading it aloud to no one but me.

Planning to go home Thursday

We did meet with a hospice representative at the hospital today and Robin requested their services. Afterwards we met with Robin's physician who says she can plan to go home Thursday.

Next Step?

From Dad:
Robin, while still in the hospital, had a pretty good day today and didn't need much in the way of pain meds. They spoke to the oncologist and the recommendation is to investigate Hospice care. Robin has agreed to meet with the Hospice folks while still in the hospital – should be in the next day or so.

Thanks to everyone for their continued support.

Serenity Prayer

Some time ago I took a tip from Michael J. Fox's book and I carry this on a printed card in my wallet…

God, grant me the serenity
to accept the things I cannot change;
the courage to change the things I can;
and the wisdom to know the difference.

Cancer run amok (hospice discussion)

The past three weeks had been considered an experiment to see what chemo could do for Robin. Her reaction to the first course of chemo began typically. The first seven days she had increasing fatigue, nausea and associated dry heaves. We also saw the tumor just below her jaw shrink rapidly until it almost felt like it was gone. She then enjoyed three to five days in which she was more awake and the nausea began to dissipate.

Then just before New Years things started to go downhill. She began sleeping more and the nausea and vomiting returned. The pain in her body also came back, but was much more severe. She and I came up with various rationalizations why she might be feeling worse, but by New Years day things had gotten so bad we had to take her to the hospital. Last Friday the doctor ordered a second course of chemo, basically to try to help control the pain - and we appear to have had success in that respect (albeit maybe short-termed).

Unfortunately by Friday the tumor on her neck was also back and it appeared slightly larger than in early December. Based on what the doctor has observed during the first course of chemo she indicated that she does not believe it would be beneficial to continue chemotherapy in the future. She stated that if Robin desired a third course (in about three weeks) then the doctor would want to sit down with us and have a discussion about the merits of that option.

The doctor then began to describe some of the services offered by Hospice. In particular she noted some services which Hospice can provide in a home setting, but which the Oncology office could not provide - for instance IV pain medication. The doctor also explained that Hospice does not accept patients if they are continuing to receive therapeutic services such as chemotherapy.

I expect we'll have more detailed conversation with the doctor in the near future, rather than waiting three weeks. Especially since the doctor seems to have formed a opinion about Robin's status.

I had a talk with my Dad earlier this evening about how things are going. I talked about how we discuss this experience as being part of the "journey of life" and about how this a "natural process" and "simply part of life", but I added - this basically really sucks. (well, I had quite a few more choice words, but the blog entry wouldn't be improved by profanity).

Robin's still in the hospital today. We're expecting she may come home Monday or Tuesday unless there's a change in her status. This evening she wasn't feel well (she had the chemo heaves!) so I climbed into bed with her and she snuggled up to me for most of the evening.

And yes, even after all of this, she still has her sense of humor and her can-do attitude!

More comfortable

Robin has been sleepy but feeling more comfortable. She only needed pain meds once Friday morning and once Saturday morning.

Chemo today - yea!

Robin did her chemo this afternoon. She hasn't taken pain meds since early this morning so the recent steroids and chemo seem to be helping to make her more comfortable! Recently she's been pretty uncomfortable and so having a day being "pain and nausea free" made a big difference in her level of smiling and laughing.

Foundations!

My brother Jonathan has been with us all week! He's doing his laundry right now so he'll have something clean to wear tomorrow (he didn’t expect stay this many days) :) Jon will head tomorrow and my brother Corry will be arriving to stay for a while.

Except for running errands and going home for meals, we spend most of the day with Robin. Our families have been wonderful about being around, especially when things change - like Robin going to the hospital this week. The visitors and local friends have been enormously helpful in reducing my stress. I've discovered that I'm never thrilled with changes in Robin's status and it always seems to take a few days for me to readjust.

Thanks to everyone for being our foundation and helping to keep us grounded!

Robin - Thursday

They did a bone scan today, I suppose we'll learn about the results on Friday.

We met with Robin's main oncology doctor, Regina. She's such a positive and upfront person to work with! The doctor noted that the blood results did not uncover any type of infection which would be causing her to have a temperature (typically it's between 100.1 and 101.3). We also discussed things that have reduced Robin's pain in the past. She seemed to feel better when she has received steroids and when she has received chemo. Robin's been receiving steroids today and the plan is for her to receive chemo on Friday.

Overall Robin seems to have been in less pain as the day went on. She has doctor's orders to get pain pills every four hours, plus she can request an injection anytime. She often declines medication at the four hour mark and sometimes goes six hours before she requests medication.

I am a little concerned about her receiving chemo simply because she's got less "pep" in her than in the past, but we think it will help with the pain. Robin had wondered when she might get discharged and the doctor said it would be good to first get Robin's pain and temperature under control. All I know is I brought in enough clean underwear to get her through the weekend!

Daily moments

One of the things that Alex the counselor suggested was that I look for the moments during the day when Robin and I connect. Robin's mood can be changeable depending on the stress on a particular day, how her stomach feels and what pain she is experiencing.

One moment yesterday was when she'd been feeling stressed and I gave her a light massage over her arms, legs, hands and head. I could see her get more and more relaxed as we went along and then I got the payback of seeing her de-stressed after I was done. I know families have all sorts of issues to deal with when confronting something like cancer. I can't imagine how people do it without a little (or a lot of) massage everyday!

Today I got to feed Robin dinner - a little cottage cheese and pears! She really is capable of feeding herself, but it was nice to be asked to spoon feed her! :)

Good news, not so good news

Well, the good news is that a neurologist stopped by this evening to check Robin out. After observing the feeling in her arms and legs and checking the strength of her muscles he stated that he did not think she had a neurological issue. Her left leg does appear weak, but the signs don’t match what he typically sees in a patient with spinal cord issues. Her description of pain also didn't match what he typically sees and he thought it was more likely bone pain. He said he would recommend a couple of tests to the oncologist and he thought she could probably get those done Thursday.

Well, so, the bad news is that none of the doctors has been able to decipher yet what's causing Robin's current symptoms (pain, occasional nausea and slight fever). The pain in her left leg affects her mobility a little and she and I talked about how that could limit her ability to go up and down stairs if she were to be discharged to home. I guess no one has yet even suggested sending her home yet so that's a secondary concern at the moment.

Robin update - Wednesday

Robin has had a few tests the last couple of days (a few x-rays and an MRI). Today an oncologist saw her and stated that the tests did not show anything to indicate that her pain is being caused by the cancer. The MRI does show that she had a compression of the disk between the L4 and L5 vertebrae. There is more compression on the left side of the vertebrae and that seems to correspond with the greater pain radiating down her left leg. She will continue to remain in the hospital Wednesday night and a neurologist will evaluate her condition.

The doctor who saw her was not her regular oncologist, though he is with the same group. Her asked about the tumors just below her right jaw. She noted that during this last round of chemo, one of the lumps hasn't changed in size. The second lump shrunk, but is now back to about the same size. The doctor made the observation that the selected chemo does not seem to have been very effective - I guess they prefer to have tumors shrink and then not come back right away (isn't that what we all want?). Anyway, he noted that Robin's primary oncologist might want to consider a different set of chemo drugs next time around. Robin was due to start her next course tomorrow (Thursday). We don't know if that will still proceed as scheduled, but we'll learn more Thursday morning.

No news today...

Robin had a few tests today - an MRI of her lower back, x-rays of her pelvis and legs, and an ultrasound of her bladder. I asked the nurse when the doctors are expected to give us an update. She said they usually stop in to see their patients around 8am, so tomorrow morning we should have more information. For now, Robin will remain in the hospital.

Yesterday I called my brother Jonathan in the afternoon and he drove out from Boston last night to stay with us for a few days!

A great big pain in the patch…

At 3:00pm they increased Robin's "pain patch" medication by 50% (by putting on a new, bigger patch).

Around 4:30 she was not feeling well, so she took some strong anti-nausea medication. At 5:30pm she started throwing up. The doctor said he's seen a few people who have this reaction to the pain med patches, so he had the patch removed and now he has her on just Dilaudid (she's happy about that!)

Robin will have an MRI performed on Tuesday to see if they can pinpoint what's going on.

Robin to the hospital

Robin's hair started falling out the last couple of days. Last night she shaved her hair off with a trimmer so she's bald again. I didn't cut my hair off. I felt like I can be by her side, but there's only so far I can follow her down this path.

Anyway, this morning she woke to some pretty severe pain. She asked me to pull the sheets off of her because they hurt pressing against her skin. She had pain in her legs, abdomen, and chest and she was running a temperature of over 101. She immediately took some medication which reduced the pain a couple of notches. We dialed the doctor's office and got the on-call doc who suggested we make a trip to the emergency room.

Well, they finally found a pain med that works great for her - Dilaudid (hydromorphone)! Like morphine but with fewer side effects! She had the best rest for a couple of hours and she said it was the first time in months that she had absolutely no pain! It was great to see her smiling with a relaxed grin again.

They decided to admit Robin to the hospital. Presumably she has a temperature because her body is fighting off an infection. Samples of her blood were sent to the lab to determine what's causing the infection before they decide what to do next.